Disability Research Ethics
The UN Convention on the Rights of Persons with Disabilities (UNCRPD 2006) has the potential to transform ethical practice in disability research across the globe. This chapter outlines the current knowledge base in the field of ethics in disability research, especially with regard to the UN Convention, its contents and their implementation. The chapter concludes with some proposals on ways to ensure that the Convention’s potential is fully realized.
It is not always the case that research which investigates the lives of disabled people is conducted in accordance with normal ethical principles and the Convention explicitly addresses this problem. Disability research often presents particular challenges when aiming to achieve full operationalization in this field, of the normal core research principles with regard to ethics, such as informed consent, confidentiality, privacy, respect, and equality. These requirements are not always met since researchers, along with research funders and managers, may not be well trained or informed in the field. Indeed, some practitioners overtly avoid ethical requirements because of their resource implications. When these principles are inadequately addressed, the resulting research is of reduced quality and can damage trust in the research process among disabled people. There is a danger that poor-quality research conducted without careful attention to ethical practice leads to a poor knowledge base underpinning changes in policy and service provision for disabled people.
This chapter discusses the impact of the UNCRPD on ethics in disability research, both in terms of its potential and the progress to date. Strategies for increasing the scope and pace of change are also proposed. The author has several decades of active disability research experience focusing on global, European, and national levels. This work has included contributing to the development of guidelines for good ethical practice in disability research, with the WHO ICF FDRG and the UN Washington City Group on Disability Statistics during the period 2003–2015, as well as for the European Union and the Irish government (2002–2007). Lessons have been drawn from this work, and general principles are accompanied by proposals for future development.
KeywordsUnited Nations Convention on the Rights of Persons with Disabilities (UNCRPD) Human rights disability Medical model Social model Vulnerability Privacy Respect Consent Research literacy Research ethics committees/boards
- Brady G, Good A (2005) Methodological preparations for an Irish post census national disability survey in 2006. Paper presented at Washington Group on Disability Statistics 5th meeting, Rio de Janeiro, September 2005. http://www.cdc.gov/nchs/about/otheract/citygroup/products/citygroup5/WG5_Good_Brady.doc. Accessed 4 July 2019
- Dench S, Iphofen R, Huws U (2004) An EU Code of Ethics for Socio-Economic Research. Report 412. Institute for Employment Studies: BrightonGoogle Scholar
- Good A (2002) Ethical guidelines for disability research. National Disability Authority, DublinGoogle Scholar
- Good A, McAnaney D (2003) Methodological preparations for the first Irish national disability survey. NDA, DublinGoogle Scholar
- Government of Canada (2015) Research ethics boards: guidelines for researchers. www.pre.ethics.gc.ca
- Hirst R (2000) The international disability rights movement. www.leeds.ac.uk
- International Classification of Functioning, Disability and Health (2001) World Health Orgaisation: Geneva. www.who.int
- Iphofen R (2009) Ethical decision making in social research: a practical guide. Palgrave, HampshireGoogle Scholar
- Leonardi M, Chatterji S, Ayuso-Mateos JL, Hollenweger J, Üstün TB, Kostanjsek N, Newton A, Björck-Åkesson E, Francescutti C, Alonso J, Matucci M, Samoilescu A, Good A, Cieza A, Svestkova O, Bullinger M, Marincek C, Burger H, Raggi A, Bickenbach J (2010) Integrating research into policy planning: MHADIE policy recommendations. Disabil Rehabil 32(Suppl 1):S139CrossRefGoogle Scholar
- Mont D (2017) Training on how to ask “disability” questions on censuses and surveys, in www.washingtongroup-disability.com/washington-group-blog/. Date 13 October 2017. Accessed Oct 2017
- Riddle C (2016) Human rights, disability and capabilities. Palgrave Macmillan, New YorkGoogle Scholar
- Shakespeare T (2013) Disability rights and wrongs revisited. Routledge, LondonGoogle Scholar
- Union of Physically Impaired Against Segregation. (UPIAS) and The Disability Aliance (1976) Available inNational Disability Arts Collection and Archive the-NDACA.orgGoogle Scholar
- United Nations Convention on the Rights of Persons with Disabilities. 2006. UN New York.Google Scholar
- WHO (2017) WHO code of ethics and professional conduct. https://www.who.int/
- WHO (2018) How to use the ICF: draft practical manual for using the ICF. https://www.who.int/classifications/icf/en/
- WHO Research Ethics Review Committee (2018) Informed consent template for research involving children, qualitative studies. https://www.who.int/
- These comprehensive websites include advice on improving research ethics in their respective research aspectsGoogle Scholar